Thursday, September 28, 2006

It's fine for you, but...

Because extreme, stereotyped images of autism as a devastating tragedy are so widespread in our society, autistic activists who oppose the idea of curing autism often are assumed to represent a tiny elite consisting of only the most capable autistics. As a result, these activists are accused of being oblivious or callously indifferent to the needs of the less fortunate. The accusation usually looks a lot like this (the following is not an actual quote, but a composite):

"It's fine for you to want acceptance, but what about all those low-functioning autistics who can't even understand the meaning of the word, much less blog about it? They lack any ability to communicate. Their lives are full of fear, anxiety, and frustration. They must wear helmets and other protective devices because of self-injury. They are not even aware of their condition. How can you be so hard-hearted as to deny that those tragic sufferers desperately need a cure?"

I'm going to take a close look at each of these assertions about "low-functioning autistics," beginning with the misconception that large numbers of autistics fit this stereotype.

"all those low-functioning autistics... lack any ability to communicate"

Although speech delays and other differences in language development are characteristic of autism, research has shown that approximately 90 percent of children on the autistic spectrum develop speech by age nine. (C. Lord et al, "Trajectory of language development in autistic spectrum disorders," in Developmental Language Disorders: From Phenotypes to Etiologies, 2004.) Of the remaining 10 percent, some learn to speak at an older age, while many others rely on alternatives to speech, such as sign language and augmentative communication devices. Some autistics who have no speech, or minimal speech, or who find speech difficult or uncomfortable, can communicate very well through typing; at least two augmentative communication users are now blogging on Autism Hub. (If anyone has valid statistics on what percentage of autistics communicate through alternative means, I'd be grateful if you would post them in the comments.)

"Their lives are full of fear, anxiety, and frustration."

Even among the small population of autistics who lack a reliable means of communication, strong negative emotions don't necessarily follow from the simple fact of inability to communicate. Emotions vary greatly from one person to another, depending on whether someone has a natural tendency toward calmness or anxiety, as well as whether he or she lives in a safe and predictable environment. Although failed attempts to communicate can indeed result in frustration and anxiety, this would not happen if non-speaking autistics had better access to alternative methods of communication. Often they are denied the necessary tools because of an ignorant and inefficient bureaucratic system (see this comment from a behavior analyst, describing what a struggle it is to get augmentative communication devices for his autistic clients who need them)."They must wear helmets and other protective devices because of self-injury."

I recently wrote a post about self-injury, and I'll just sum it up briefly here. Many people who struggle with self-injury feel that they lack control over their lives. This problem (which is not unique to autistics) is best dealt with by giving them more opportunities to make meaningful choices and to practice self-control, not by strapping them into helmets and restraints at the first sign of agitation.

"They are not even aware of their condition."

All the evidence is to the contrary. Autistic people who learned to speak or type at an older age can describe events from their childhood with accuracy, although they had no means of communicating at that time. On this point, I recommend a post on the Ballastexistenz site, "Who thinks what about being autistic," which has many excellent quotes from autistic people who use augmentative communication. The idea that autistic people who lack a reliable means of communication are unaware of their condition is a groundless prejudice, similar to the historical prejudice against deaf-mutes, who often were not taught to sign or write because they were assumed to be "feeble-minded" and incapable of learning.

Yes, there is a tragedy here, but it is not the absence of a cure for autism. It is the failure of our society to treat non-speaking autistic people with respect for their human rights, to provide the tools that they need to communicate, and to ensure equal opportunity for them to participate in society.

83 Comments:

Great post. On the stats, I believe 90% develop some functional speech by age 9, but about 40% are able to converse. In an older study of Kanner autistics, 50% had good or very good speech in adulthood.

I think a lot of autistic people are written off as incapable if they don't develop speech, and that's why FC is not that common.

You said, "all those low-functioning autistics... lack any ability to communicate" "

but responded with, "approximately 90 percent of children on the autistic spectrum develop speech by age nine."

Your setup suggests a comment about low-function autistics but you respond with a statistic addressing the entire spectrum at large. I do doubt though that there are statistics on specifically low-functioning autistics because you don't have a reasonable definition of what "low-functioning" is. My opinion of what is low-functioning is going to be different from someone else's.

I think this problem is inherent in discussions of the conditions because of the ambiguity of the definition of the word autism. My son has autism, but in the classic sense. Yet, the same word is used to describe the entire spectrum.

I personally prefer that people (whom you are paraphrasing) just stay away from absolutes. Using superlatives like "all" and absolutes such as "will" and "do". Such language is prone to stereotyping. However, I do think in the issues you've paraphrased, it would be fair for someone to say "many" or "great numbers of".

We won't agree on a lot of things, I'm sure, but you do give another perspective on things. I take avoiding absolutes seriously in my own life and judgements as well.

Joseph: The 40 percent refers to Kanner autistics, rather than the whole spectrum, right? (It wouldn't make sense otherwise.)

Christopher: You're quite right that there is no reasonable definition of low-functioning, or severe autism, or mild autism, or any of those distinctions. (I wrote a post about that last year.)

The statistic about the entire spectrum in this post is intended to show that many autistics are capable of communicating, that those of us who write well enough to blog are not a tiny elite, and that "all those low-functioning autistics" is a misleading description because there really aren't that many adult autistics who have no ability to communicate. (And often it's not because of an innate lack of ability to communicate but because they were written off, as Joseph mentioned.)

NM; Any intelligent golfer can find lots of uses for a wedge. The games probably too complicated for you. Maybe you could get together with Kathleen Seidel and accept DR Deth's offer to enlighten her. You're perseverating. Maybe the mb-12 would help you.

ABHF,Thanks again for another good post. What I got out of it was that if society can show more respect for autistic expressions and give them more opportunities, everyone wins.I may be seen as simple. I do appreciate things described to me in simple ways.My I.Q. score is fairly low. However, they neglected to ask some questions on that test that I think would have made a difference in my score.For instance, they didnt ask about my ability to see value in autistic expressions. They also didnt ask me if I knew when someone was trying to show respect for me and others with autism. I think these are valuable skills.Post like this help me with those skills even more.Thanks, Ed

"What I got out of it was that if society can show more respect for autistic expressions and give them more opportunities, everyone wins."

I get this too. I argued in my MEd thesis for the right of autistics to define and describe ourselves for ourselves, instead of using the politically correct stuff ...

"I may be seen as simple. I do appreciate things described to me in simple ways."

Isn't that usually the best way to do things unless a more complicated way gets it done better (which is not necessarily quicker)...?

"My I.Q. score is fairly low."

IQ scores have a very limited range of convenience, to be honest... I know an autistic woman who had a measured IQ of 83. She's about to complete her PhD, which will be her fourth academic qualification.

"However, they neglected to ask some questions on that test that I think would have made a difference in my score."

This is one major thing that accounts for variance between any two similar IQ tests... not so much what they ask you as what they don't.

"For instance, they didnt ask about my ability to see value in autistic expressions."

It would be interesting to see what might come about if a simple intelligence test, say two vocabulary scales (definitions and naming) and two non-vocabulary scales (maybe matrix reasoning and a block design or a tile construction type task), could be developed and normed on an entirely autistic population and used to test non-autistics. But there's also - as your point brings up here - the issue of *types* of task involved in demonstrating one's intellectual ability. Maybe if a parallel norming of a version of WAIS was done for autistics (using the block design, matrices, vocabulary and information tasks), we might see interesting results when we compare non-autistic performances against the autistic norms... these are said to be autistic strengths in most cases. But I have to agree... very few - if any - psychological tests have been designed to tap specifically into areas of intellectual ability in which autistics might well shine. And it does indeed work against the autistic person.

"They also didnt ask me if I knew when someone was trying to show respect for me and others with autism."

Quite... testing is practically no good without some way of linking test results to real life situations. Many issues like this crop up in testing these days, particularly since the advent of an expanded range of methods of research and psychological investigation.

Mr MEd Andrews; Like I've said before, if IQ tests asked lots of questions about how to stop pucks, goalies would have the highest IQ's. The tests measure general intelligence and reasoning ability. Not much chance you'll ever score well.

JBJr: "Mr MEd Andrews;Like I've said before, if IQ tests asked lots of questions about how to stop pucks, goalies would have the highest IQ's. The tests measure general intelligence and reasoning ability. Not much chance you'll ever score well."

For one who claims to 'love' autistic but not the autism, you really make a good impression of hating the fact that we exist. Do I really present THAT much of a threat to your lovely wee lawsuit that you have to decry every achievement I make in order to feel good about yoru claim against the drug companies? If so, you are a very desperate man indeed. And my IQ, at 6 was 119; at 10 or so, it was 129. You, for a psychology major, have way too much to learn about psychometrics to be able to argue with me. To be honest, JBJr, you have way to much to learn about most things to be able to argue sensibly with me.

That's because you have very little 'real' intellectual ability: you sold yours to the mighty mammon, didn't you, when you found a way to make money off your son.

And I (along with way too many like me) threaten your case against the drug companies.

So your only recourse is to hate us. I can understand that, psychologically; but that doesn't mean it is any the more rational. In fact, it is pretty clearly irrational.

You want to live irrationally, JBJr, you go ahead and do it.

Don't drag me and mine down there with you, you desperate lower-intellect being.

Actually, this is not exactly correct. The tests measure various aspects of intellectual function, but no two tests tap into exactly the same skills.

Let's compare the WASI (Wechsler Abbreviated Scale of Intelligence, which I use) and the K-BIT (Kaufman Brief Intelligence Test, which I also use).

The two-test administration of the WASI relies on a measure of vocabulary and non-verbal reasoning. The K-BIT also relies on a measure of vocabulary and non-verbal reasoning. Both of these administrations of the tests have - on the surface - the same tasks involved in each.

There is, however, a major difference on each task: the WASI vocabulary is mainly concerned with definitions and synomyms whilst the K-BIT vocabulary is mainly concerned with naming objects presented in a fairly prototypical picture format; and the matrices in the WASI are presented in colour format, whereas those in the K-BIT are presented in black and white (no grey-scale). These conditions alter the very nature of the tasks involved. Which is why I use both tests.

Like I say, the tests actually measure ability using very specific tasks, and so the results of test have to be understood in terms of their rather restricted range of convenience. In general ability tests (e.g., the Raven Progressive Matrices), we're looking at the ability to educe relationships using minimal linguistic skills. The TONI-3 and the C-TONI are quite similar to this. However, as we see from the WASI vocabulary test and the K-BIT vocabulary test, the actual skill being tapped into is totally different: defining/synonymising v. naming. A reasonably competent BA psychology major would be aware of this sort of difference.

Sure, a test could be constructed for goalies in the same way that Edgar Stones suggested in 1966 that such a test could be developed to separate lumberjacks according to a rigidly defined set of abilities. And maybe all lumberjacks would score higher than most on this test. But isn't that the point... that the tests do not in fact measure so generally?! Would one expact a lumberjack to score highly on a very educationally-driven test of ability when compared to his or her ability in that specific field? Any difference in score between a WASI/K-BIT IQ test and a specific lumberjack/goalie/whatever-specialist-field-one-fucking-likes is more likely to be derived from sampling error than from pure ability. In fact, the difference between the two types of test mentioned may be more to do with achievement than raw ability. As any BA psych-major could be reasonably expected to know (JBJr, it is clear that you didn't know this, or why would you have argued the toss on something you would clearly lose on, silly boy!).

JBJr (without intending to) does bring up an interesting point. IQ tests seem fairly pseudoscientific. What do they measure? They are said to measure intelligence. But how is intelligence formally defined except by IQ? I think IQ is a pretty good (by no means perfect) predictor of academic achievement, but it's not that great of a predictor when it comes to life outcome. Certainly if autistics are high scorers in the RPM test, that's interesting, but it's clearly not of much use in this culture.

Indeed he does. Entirely without intention, since he has less clue than we do about anything.

Joseph: "IQ tests seem fairly pseudoscientific."

Wrong, actually. They are very scientific, provided that one does nto go outwith the limits of their ranges of convenience. Overall IQ is indeed correlated with academic success *at school*. It is nto correlated so well to *work performance*, for one example. Science models things within ranges of convenience (George Kelly's phrase), and no model is likely to ever be a Grand Unified Theory of Everything. This is certainly so in psychological testing.

Joseph: "What do they measure?"

They measure specific attributes related to very specific tasks.

Joseph: "They are said to measure intelligence."

They do, but within a rather narrow definition: if a definition is too narrow or too broad, it is - scientifically speaking - useless.

Joseph: "But how is intelligence formally defined except by IQ?"

It can actually be defined in qualitative terms, which cannot be rendered in terms of an IQ figure. Stones' 1966 publication gives a sterling example of this.

Joseph: "I think IQ is a pretty good (by no means perfect) predictor of academic achievement, but it's not that great of a predictor when it comes to life outcome."

Exactly my point. The range of convenience is limited, for anything we choose as a model and a way of measuring according to that model. That's why I mentioned the case of a person with a measured IQ of 83 being a PhD candidate (if she hasn't actually submitted for that degree already!)-

Joseph: "Certainly if autistics are high scorers in the RPM test, that's interesting, but it's clearly not of much use in this culture."

Not without knowing what success in RPM actually means. And here's the rub: RPM, like the Wechsler block design task, is highly saturated in 'g' (Spearman's general intelligence factor), and it is, indeed, hard to sift out (without asking a shitload of questions of the examinee regarding what they did on any particular task, or item within any particular task) exactly what it is that contributed to the score achieved. The score is practically irrelevant, if the knowledge of how that score was obtained is missing from the equation. This has been the thinking in serious psychometrics since at the latest 1972....

"If I'm a lower intellect being, and my IQ is roughly 100 points higher than yours, what does that make you?"

Parked somewhere in reality unlike the author here who obviously has more than the odd deficit, including some measurable deficiency in numeracy along with the limitations in reasoning and language use. Ah well, at least our Johnny is consistent.

JBJr: "If I'm a lower intellect being, and my IQ is roughly 100 points higher than yours, what does that make you?"

More likely to be grounded in the real world than you, that's for sure.

Put it this way... I'm qualified to administer tests, and know how the scoring system works. Such as IQ is worth anything (and, for most real life purposes, it actually isn't!), my last measured IQ being 129 (practically 2sd above the mean) would mean your'd need to have a measured IQ (on the same test, any of the Wechslers) of at least 229. Deviation IQs (which is what the Wechslers give) can't be accurately measured that far up. Which - in practice - means that you are talking bollocks.

If you are talking bollocks and know it, then you're a liar; if you're talking bollocks and *don't* know it, you're a fool.

"If I'm a lower intellect being, and my IQ is roughly 100 points higher than yours, what does that make you?"

That would be impossible, because the highest IQs in the world are estimated at around 210. And that's bullshit anyway because IQ tests start to lose precision above 130 (David probably knows more about that). Only about 1% of the population scores above 135.

Joseph: "And that's bullshit anyway because IQ tests start to lose precision above 130 (David probably knows more about that). Only about 1% of the population scores above 135."

It would be possible to construct a test to give ridiculously high IQ figures, simply by using a different value for the standard deviation (most full scale IQs are set as being M=100 and SD=15; SB has them as 100 and 16 respectively). It isn't the actual IQ score that is important in the numbering: rather, it's how far it is from the mean score, since the IQ test is essentially a means by which to compare one person's performance against a group's average.

Regarding the loss of accuracy after about 130, you are quite right... a FSIQ of 130 is 2sd above the mean, and places the examinee at about or above the 98th %ile (an IQ score is usually best seen as a lower limit of someone's performance)... clearly, it is hard to separate out performances sufficiently well to distinguish *meaningfully* between any performances when the scores are basically outliers.

MEd; IQ's must have dropped quite a bit since I went to school. Prevailing wisdom used to say it was impossible to measure them accurately above 180, not 130. It must be the mercury dumbing down the population. Being proud of your low score jives with the neurodiverse acceptance of mediocrity.

They don't. The IQ is kept a constant measure. I'd have thought you'd have known that: IQs are given as deviation IQs, based on (since you seem to have to be taught by constant repetition) the extent to which a score deviates from the mean score. Renorming the tests means that raw scores may change, but overall IQs don't, since they are derived from the data, and have no absolute value.

For someone who claimed to have a psych major, you're remarkably ignorant of the basics here.

JBJr: "Prevailing wisdom used to say it was impossible to measure them accurately above 180, not 130."

Wrong. Anywhere between the 98th and 99.9999th %ile is impossible to differentiate in such a way as to make any meaningful discrimination between two different scores and what they mean in terms of performance.

Low score? You dim person. 129 FSIQ is not low (about 98th %ile), purely by definition. You really are a man whose education was a waste of time and money, aren't you? And still you try to argue that black is white... That's the epitome of stupidity, really.

Do you actually have anything that you could constructively bring to this thread, or are you going to do us all a favour and bugger off? (I'd think that ABFH would prefer this thread to stay on topic, and you seem to be all for derailing it, and making it about you and how clever you are and how autistics are thick; maybe better for you to get out now, while you don't look *too* stupid).

129 is 97th %ile. They admit those above 98th %ile (130). I'd say that it's very close indeed.

From MENSA International site: "The society welcomes people from every walk of life whose IQ is in the top 2% of the population, with the objective of enjoying each other's company and participating in a wide range of social and cultural activities."

Interesting that JBJr brings up MENSA, because the local group in Kotka have asked me to go to their den and talk to them on the topic of "Asperger syndrome and Intelligence".

I'm not sure I'd really want to join the organisation, though; doing so was once suggested to me a few years ago, when I was an undergraduate at Oulu university, by the woman doing the interpreting for me when I was doing a lecture at a local adult education college. To me, an IQ in the top 3% of IQ scores is hardly a basis for joining a club. And that sort of IQ doesn't confer anything that special (in terms of expertise) since expertise is not actually related to IQ: it is related to how well one understands the relationship between the different aspects of one's knowledge.

Actually, this may be pertinent to the thread given the point on which I entered the debate (before JBJr decided to come in and try his usual 'derail-them-cos-I-can't-do-anything-useful' approach)... Ed's point about "My I.Q. score is fairly low. However, they neglected to ask some questions on that test that I think would have made a difference in my score."

It *is* possible that the test did not allow Ed to answer so well as he might otherwise have done on maybe a different test. I'd probably be repeating myself to go into it here, since I've mentioned it before here, I think.

MEd;Mensa used to have higher standards. The fact they lowered it proves my point about the dumbing of the general population. The fact that your local group invited you to speak makes me think they want you for comic entertainment.

Part of what I feel may be relevant to this debate is that people with autism often have splinter skills.My original comment had to do with respect and the comments that followed described very well how one person clearly respected my expression and another did not.I respect that many autistics like to debate and are good at it. I want to show respect for them so I can learn from them. Im hoping I dont have to become an expert debater in order to do that.I think that if some of my skills that are seen as splinter slkills were more appreciated in society I would have more opportunity to contribute to society. If society would create more opportunities for some of the different ways that people with autism express themselves and what we actually CAN do well, everyone would benefit.Thanks, Ed

The standard has always been top-2% (at or above 98th %ile). Can't really get higher than that, can you?

JBJr: "The fact they lowered it proves my point about the dumbing of the general population."

What... you mean like Eli Lily invented autism? How do you get to be this stupid with just one head? LoL

JBJr: "The fact that your local group invited you to speak makes me think they want you for comic entertainment."

I think I might just mention this exchange to them... that WILL get them laughing.

I seem to have given you a spade that you seem to be using to dig yourself deeper and deeper into a hole in the ground. You are looking more and more stupid with every attempt at belittlement you make; your not hurting me, John... you're hurting yourself, and you're hurting Generation Rescue... and that's fine by me.

MEd; When my father joined Mensa about 40 years ago, I believe the cutoff was 140 or 150. If it's now 130, they have lowered their standards. That's one way to get more dues from stupid people who really don't belong there.

"Part of what I feel may be relevant to this debate is that people with autism often have splinter skills."

Here's where part of my point comes in, really... the notion of splinter skills. I'm not sure they are really 'splinter skills' in that they are skills that we can appreciate but which society seems incapable of working with. The 'splinter' element seems to come from the cultural environment and expectations/values that it holds regarding the skills in question.

"My original comment had to do with respect and the comments that followed described very well how one person clearly respected my expression and another did not."

I hope that I turned out to be the one who did show that respect. That was certainly my intention in saying what I said about the whole IQ issue. There is someone comes here who really doesn't like autistics or respect our take on ourselves.

"I respect that many autistics like to debate and are good at it. I want to show respect for them so I can learn from them. Im hoping I dont have to become an expert debater in order to do that."

I'd say that you wouldn't need to become an expert debater at all...

"I think that if some of my skills that are seen as splinter slkills were more appreciated in society I would have more opportunity to contribute to society."

I agree entirely here. This has always been my point in this thread, even with JBJr's attempts to derail things.

"If society would create more opportunities for some of the different ways that people with autism express themselves and what we actually CAN do well, everyone would benefit."

Essentially, you're talking about the accommodation of differences within the fabric of society. Again, I agree with you here too.

MEd; When my father joined Mensa about 40 years ago, I believe the cutoff was 140 or 150. If it's now 130, they have lowered their standards. That's one way to get more dues from stupid people who really don't belong there."

It has always been the top 2%. And that has always been (certainly with respect to Wechsler tests and most other IQ tests, where the mean scaled score is 100 and the standard deviation is 15) 130+. It's defined that way. If a test has a mean of 200 and a standard deviation of 30, you could get an IQ like you claimed earlier for yourself and it would look impressive as an absolute figure, but it would actually mean that your IQ (in terms of what IQ actually represents) would still be lower than mine... you'd be at the 84th %ile; I'd still be at the 97th %ile.

You really are looking stupid now, John. Seriously. Do yourself a favour and stop while your not going to get ridiculed walking down the street.

Yes David,You were most certainly the person who showed the respect and you continue to do so. Thanks also for saying that I dont need to become an expert debater. What might the term splinter skills imply that I might not yet get? Understanding this better might help me.Thanks, Ed

"Yes David,You were most certainly the person who showed the respect and you continue to do so."

*blushes* No reason *not* to respect you, really... you have come into the discussion to find things out and to put ideas out and see what people think. The idea of exchange of ideas and understandings is what drives the people here (at least, those who don't come with the intention of belittlement). You brought up an issue which has a lot to do with the work that I do. And it was a sensibly-made point... which is all one really needs to put out in a debate :)

"Thanks also for saying that I dont need to become an expert debater."

:) Welcome... like I said, it's just about making a point sensibly, and I feel to some extent that I got your point.

"What might the term splinter skills imply that I might not yet get? Understanding this better might help me."

'Splinter skills' is a term, like 'islets of ability' before it, that professionals used to use as a means of noting abilities that did not go along with a person's IQ score (as if the IQ test could really be the arbiter on anything to that extent). The problem isn't about autistics having only 'splinter skills'; it's more about autistics having skills and abilities that society doesn't value so much, so it has to pathologise them, and give them names like - well - 'splinter skills'. If you need more to clarify, just ask... this is not exactly easy stuff for most to get: psychologists have been missing it for years.

DNA Mr Ed; It's not very intelligent of you to make comments about my son's progress with chelation when you've never met him. The fact is kid, he's learning new things all the time now. At the rate he's going, it certainly won't take him until age 40 like you to have his degree. What took you so long to finish it? Were you in prison or something?

JBJr: "DNA Mr Ed;It's not very intelligent of you to make comments about my son's progress with chelation when you've never met him."

I don't need to meet him: ALA has no chelating power at all. He's developing because he is a living person... and all living people develop.

JBJr: "The fact is kid, he's learning new things all the time now."

I am actually very glad for him that he is. But it is pretty bloody certain it is not the ALA that's helping him do it.

JBJr: "At the rate he's going, it certainly won't take him until age 40 like you to have his degree."

Good. Sooner to get is usually better.

JBJr: "What took you so long to finish it? Were you in prison or something?"

Heh, nowhere near.

I was 26 when I first went to uni. I also took time out because I was living with someone and went to retrain in electronic engineering. That relationship fell through (which was not really a problem, cos the woman concerned treated me like shit... just like you do). I went back to university, and did it part time (which meant I could get my benefits). I then took time out when I moved over to Finland, because of raising my daughter, who is autistic, and has never needed ALA or any other chelator (simply because heavy metal poisoning and autism are two totally different thing. And then went for the last lot in one five year slog, whilst working.

John, Listen... a word of advice, yeh?

Take it easy, man... obviously, your desperation about Sam is deep. I can appreciate that. But your belief in the ALA thing and in Andy Cutler and his 'protocol' is misplaced, really. Anyone with any sense will tell you the same. Your anger at the system is not, however, any sort of excuse to hate autistics (which you most certainly *do*).

I know the stuff that you were told by medics when Sam was diagnosed and I have told you before that they were well out of line saying that. Just don't expect me to believe for one minute that ALA is doing the work with Sam: that would be his own tendency to develop that does that. And stop getting so bloody angry with people when they point out that out to you... because it really does make you look foolish.

And I doubt that you looking that foolish is going to help you (to help Sam) in any court of law.

David; Sam didn't develop at all from age 1 until chelation at age 8. He was just like kids in institutions who were in their late teens. The ALA caused his progression. It's good you understand that mercury poisoning and autism are two different things. Could you explain that to all the other parents so they can chelate their mercury poisoned kids and help them? Anyone who can't find a genetic problem is probably mercury poisoned. ALA, the only chelator that crosses the BBB, will help them.

When my father joined Mensa about 40 years ago, I believe the cutoff was 140 or 150.

Let's grant your father had an IQ in at least the top 1-percentile of the population, as you claim. It is well known that intelligence is highly heritable. Your father must therefore have a genetic makeup which is very rare, which in turn means it must come with selective liabilities. In other words, it is likely a genetic/neurological disability runs in your family.

Joe; If mean IQ is increasing, why did Mensa lower their standards? Sorry to disappoint you with your supposition about my family. Zero disabilities, just high IQ's for all siblings. Interestingly though, one sister was diagnosed with mercury poisoning a few years ago and had it treated with chelation by a mainstream doctor. Her symptoms were only physical so I guess the BBB protected her brain. I'll keep an eye on her for early signs of Alzheimer's just in case.

John, if all your siblings have high IQ's then why do you end up being the abberent one. And if there are no disabilities in your family as you claim then why do you seem to suffer from the disability of narrowmindedness?

JBJr: "DNA Mr Ed;Our legal system has very little to do with the truth. It's more concerned with protecting the criminals."

You see, this is what I mean.

You need to relax and take it a bit easier, John. This sort of thing has a nasty habit of twisting your head and before you know it you get caught up in a paranoia state; it is not good for you, and nor is it good for Sam. Really.

And if a court in which you were to present your case were to know about this comment, that would certainly have them less inclined to look favourably on your case.

You're only going to end up hurting yourself, and your son, by taking that sort of line of thought.

David, can you point me in the direction of some reliable stats on how many autistics learn to speak as teens or adults, and how many communicate by alternative methods? I'm trying to figure out the total percentage of autistics who remain unable to communicate as adults. (I've got an idea for another post.)

May I answer that one. Well it is a bit off the question being IQ but it is relevent to the developmental question. David would need to back it up with stats but I believe generally the following is true:

(I believe I read this in some information from TEACCH)

Along the spectrum the range of IQs is comparable to the neurotypical spectrum. This is generally how it compares. There are slightly more within the low range and there are slightly more within the very high range. Where it deviates is that there are less within the average range of IQ.

In an IQ testion situation this may make sense because it is difficult to test some autistic people as their skill areas are so intensely focussed. Therefore a person may do very high in their individidual skill areas but may score very low in general IQ testing. This may mean simply for some people that their interests or skill sets are in very specific areas.

In terms of having developmental stages this may help a bit to explain that.

(And to me this does not say "mercury poisoning" or "brain damage". Rather, it points to a different neurological development, a "different wiring" of the brain.)

Well, ABFH, I've consulted some of my texts and the main info on communication outcomes by speech are as follows:

Koegel's 2000 source reports as many as 85-90% of autistic children could learn to use spoken words to communicate; but compare this with Prizant (1983) who reported that about 50% of autistic children remained non-verbal (i.e., did not speak, but may have used gesture or other non-verbal means of influencing the actions of others)

(Jones, G., 2002: Educational Provision for Children with Autism and Asperger syndrome: meeting their needs; David Fulton, London; p59)

Howlin - overall, aproximately 30% of autistics remain 'without useful speech'; those who do talk... many may still have lasting significant impairments of communucative speech.

Cites Szatmari (1989)... two thirds of sample - problems related to verbal inflection and over-formal language, and one third had impoverished speech;

Cites Mawhood (1995) 20% of sample (19) had good communication skills, and almost 67% rated as poor; 'good' defined as: good comprehension, mature grammatical structures, able to take part in reciprocal conversation.

Given the that autistics are a 'rare commodity for research', we tend to get clinically investigated in small numbers; this necessarily threatens the reliability of the above results. I have nothing as yet for you on other communication, but can try later on. I'm thinking about going back to bed for a while.

Any Mouse: "In an IQ testion situation this may make sense because it is difficult to test some autistic people as their skill areas are so intensely focussed."

This is pretty accurate, yes.

AM: "Therefore a person may do very high in their individual skill areas but may score very low in general IQ testing."

Which is why it is sometimes better to (having conducted a full Wechsler) give the full-test VIQ, PIQ and FSIQ, and then prorate to top three or four subtests to give second 'correction' set of IQ figures. This is because a really poor performance on two to four of ten subtests can artificially reduce the general ability measurement. This is probably a part of the way in which my friend and colleague would have got FSIQ 83, and still be able to go on to get a degree in social work, a degree in applied social studies, two graduate diplomas in psychology and be going through a PhD prgramme. Rogue high scores can artificially inflate VIQ, PIQ and FSIQ. Such rogue scores, whilst being worthy of clinical scrutiny, are precisely that: rogue scores.

AM: "This may mean simply for some people that their interests or skill sets are in very specific areas."

Indeed. This is one reason why I prefer the battery that I myself use with clients... I'm interested in a general intellectual ability figure, which I can get from a WASI, rather than a WAIS; and the rest is more related to purely perceptual issues, rather than trying to assess visual perception on cognitively loaded tasks.

Mouse; The different wiring is caused by mercury short circuiting the wires.Andrews; Your ancient textbooks show less than half can talk. Why do you advocate letting them suffer this affliction when they might be cured?

JBJr: "Mouse;The different wiring is caused by mercury short circuiting the wires.Andrews;Your ancient textbooks show less than half can talk. Why do you advocate letting them suffer this affliction when they might be cured?"

Wrong on both counts, John. I suspect that you secretly know this.

The texts are not ancient, incidentally. And as for 'cure', I doubt you'll find that with any sort of therapy you have been doing.

Two texts since 1997, the others are ancient. If the texts don't discuss the role of thimerosal, they're obsolete. Of course, you could test all of this by trying ALA for a year or so and seeing if it does anything for you. Then your opinion would be valid. I saw my son without biomedical intervention for almost 8 years and two years with it. Since I have observed the differences on a daily basis, that certainly gives more weight to my opinion than someone with no experience at this.

"If the texts don't discuss the role of thimerosal, they're obsolete."

Second time wrong here, Johnny-boy.

"Of course, you could test all of this by trying ALA for a year or so and seeing if it does anything for you."

Begs the question. That's not research. That's not even good reasoning. I think that this whole mercury thing has become a serious obsession for you. And it is not looking good for you, carrying on in such an unreasonable manner in public, when you really need to present a reasoned case to a judge in any case you bring to court.

"Then your opinion would be valid."

My opinion is valid without my having to do stupid and meaningless things that you keep shoving at me, John. If you have to keep forcing them at autistics, like you do, then maybe you aren't as sure yourself of the validity of your own opinions. Go into court with that problem going in your head, John, you will be laughed out very quickly.

"I saw my son without biomedical intervention for almost 8 years and two years with it. Since I have observed the differences on a daily basis, that certainly gives more weight to my opinion than someone with no experience at this."

Did you have anyone carry out behavioural observations, all with dual-observer protocol to increase reliability of the onservation data? You have a BA with a major in psychology: you should know how to do this. Or maybe you were never listening at university.

You've made the Cutler protocol your religion.

That is very sad.

For you, because it makes you look like someone who'll sell his soul to try and get some money.

And for Sam, because you're doing things to him that you don't really need to.

You have nothing rational to put in front of a judge in a court of law; nothing that you could use in support of your case; just anecdotal evidence of 'improvement/cure'... nothing to show a judge how far Sam has progressed, and nothing to show whether you've checked for confounding variables - like, er, NATURAL DEVELOPMENT!

Joseph: "That's another thing you don't get, John. Because of heavy observer bias, one must exercise outmost skepticism when judging your claims of improvement or lack thereof."

Thank you, Joseph! Great minds think alike! We both pointed those facts out to him almost simultaneously.

Won't make any difference though. Still, it's all out here for people to see how former Capt. John Best Jr, BA MPA, has let go of his mind and bought into one of the most stupid scams ever... one for which the major 'experts' were laughed out of court along with their 'evidence'. I wonder what a court judge would make of that.

It won't be convincing enough to a judge that JBJr is a rational man, capable of producing high quality evidence to back up his case, will it? It doesn't convince me.

Mr Ed; I don't have to meet any tests for evaluating this. I get to smile as I watch the improvement. I won't try to go to court until my son can testify himself. I could call you as a witness to show the obvious folly of doing nothing to address mercury. Maybe I'd call your Diva as a witness and let her ramble on about aliens while she changes her kid's diapers to demonstrate the wisdom of doing nothing.

John, your willful stupidity surpasses magnificent, it cavorts about in the fantastic, and it comes to rest in lunacy. Unlike Mr. Andrews, who has been terribly kind to you, I do not believe you need to "get a life". Quite the opposite, in fact.

If you want evidence of how chelation was needed to cure Sam, you will. A judge will look at anything else as unproven testimony or as hearsay. Your loss....

"I get to smile as I watch the improvement."

Lovely...

"I won't try to go to court until my son can testify himself."

Ah... right, so you know that you have no evidence. But Sam's testimony will - necessarily - be hearsay. Put Sam there and appeal to emotion, eh? Or are you that frightened that you'll be asked hard questions about it all, and have no evidence to back your case up? Does neither you nor Sam any good...

"I could call you as a witness to show the obvious folly of doing nothing to address mercury."

Since mercury has no bearing on autism, why would you have me testify? That's just silly... Of course, if you're trying to insult me there, then this would not look good if your new employer were to be reading this blog, now... would it? How would they justify employing someone who would so abuse a person who, should he turn out to be resident in NH, might become a client of the services supported by the Council?

"Maybe I'd call your Diva as a witness and let her ramble on about aliens while she changes her kid's diapers to demonstrate the wisdom of doing nothing."

Um, you really need to get this hate issue sorted John. Doesn't reflect well on a professional (your place on teh NH DDC would make you a professional, right?) to be expressing so much hate to someone who may well fall within the description of a possible client of Council-supported services.

Don't take me giving you this advice as a bad thing; let's face you, you and your friend explained to me the benefit of behaving professionally at all times, right?

Mr Ed; What new job? The Council thing is a volunteer position. Some clients need guardians. The inability to think clearly on any level would suggest that. There's no hate involved, just sympathy. We have to do what's best for those poor unfortunates who can't make sensible decisions for themselves. People who argue in favor of celebrating having brain damage need someone who's sane to make decisions for them.

New job? I thought Mr. Best was on social assistance waiting to cash in on his son's autism by falliciously suing the drug companies. This is why he cannot recognize anything other than "mercury poisoning" as a cause for his son's condition.

If he did have his son tested for mercury poisoning he may have to admit mercury poisoning does NOT cause his sons autism.

But I take it back about social assistance. You are probably employed as a chelation kit salesperson. Inbetween the insults I note you advertising the stuff.

It's still a position... you need to look your best for it (pardon the pun).

"Some clients need guardians."

Most don't. And the NH DDC knows this: one of its main aims is to reduce the need for guardianships.

"The inability to think clearly on any level would suggest that."

So you would be intimating that you need a guardian here? I have looked for evidence of clear thinking in your writings, John, and I'm seeing: paranoia, hatred, delusionality, antipathy, prejudice, and more... and it is all over the internet, man... you really have been doing yourself no favours.

"We have to do what's best for those poor unfortunates who can't make sensible decisions for themselves."

Most can, given the correct support.

"People who argue in favor of celebrating having brain damage need someone who's sane to make decisions for them."

No actual proof of autism being brain damage, John; difference, yes. Damage... no. Any learning difficulties presenting alongside may well be organic, and that would be for an educational neuropsychologist to determine... not you. Your BA psychology major doesn't cover the professional skills for that (could qualify you to train further though... you might look that one up; can be good money). Hell, my MEd qualifies me for a hellova lot, but not educational neuropsychology... but I do have more neuropsych involvement in my BA-equivalence and my MEd than you do in your BA and your MPA.

You do have a lot of issues though, and they come out all the time. I'm just trying to understand you so that I can maybe offer you something that most people who read your writings wouldn't want to do: help you.

David,Maybe you can help me clarify something.There are laws if not at least standards.... for even volunteers, arent there?I mean a person cant volunteer somewhere and then be abusive to people who meet the same criteria as those who he has commited to help. Am I right?Thanks Ed

"New job? I thought Mr. Best was on social assistance waiting to cash in on his son's autism by falliciously suing the drug companies."

Thought had crossed my mind, Mouse. I can see the desperation in what he writes... and I can see how he'd look for anything that could give him a sense of hope.... no matter how false the hope is.

"This is why he cannot recognize anything other than 'mercury poisoning' as a cause for his son's condition."

Yes, I noticed. He does seem to have a problem coming to terms with the science on the matter. I mean, there may well be a period of typical development in Sam's infancy followed by a sudden regression... that's why I posted the link about childhood social regression (Heller's syndrome), because that is most likely the correct diagnosis (if a medic would be arsed enough to check it out for him).

"If he did have his son tested for mercury poisoning he may have to admit mercury poisoning does NOT cause his sons autism."

I know... that is so odd. To prove mercury poisoning, you need to prove mercury at high enough levels in the body. Then chelation with a valid chelator (IV administration), to stop further damage from occurring - although it cannot undo damage already done.

"But I take it back about social assistance. You are probably employed as a chelation kit salesperson. Inbetween the insults I note you advertising the stuff."

He has tried to put the stuff my way, I have to say. He knows he can't convince me, but he tries anyway. I'm wondering who it is he's trying to convince, to be honest.

I do feel quite sad for him, though... he has a lot to adjust to. And nobody finds adjustment that easy...

It's sad to see someone with obvious brain-power (hell... BA, MPA) go to such desperate measures to delude himself and try to get others convinced in order to fully convince himself.

"Maybe you can help me clarify something. There are laws if not at least standards.... for even volunteers, arent there?"

I'm not sure of any formal ones, as such; but I can imagine that any potential employer would have some idea of how they'd like people to present themselves...

"I mean a person cant volunteer somewhere and then be abusive to people who meet the same criteria as those who he has commited to help. Am I right?"

It would probably not look good in front of such an employer, out it that way. They'd want to know that even a volunteer was representing the organisation appropriately even if not at work at the time.

Dave; The object of the DDC is to help people achieve their potential. They can't do that if mercury is preventing their brains from working properly. Teachers can't cure mercury poisoning. Social assistance can't make mercury poisoned people whole. You would have to produce autistic 75 year olds at the rate of 1 in 166 to convince anyone that mercury is not the cause. When you can do that David, I'll consider listening to you. Until then, your best option is chelation. Then the fog will lift and you may see things clearly.

"They can't do that if mercury is preventing their brains from working properly.

But for autistics, it isn't mercury.

"Teachers can't cure mercury poisoning."

Indeed. That's a medical problem. Autism isn't mercury poisoning.

"Social assistance can't make mercury poisoned people whole."

Indeed. But autism isn't mercury poisoning.

"You would have to produce autistic 75 year olds at the rate of 1 in 166 to convince anyone that mercury is not the cause."

No. Those claiming that autism is mercury poisoning have the duty to prove. And they have failed to do it. Ergo, there is no need for anyone to prove something is not what has been claim by the opposition.

"When you can do that David, I'll consider listening to you. Until then, your best option is chelation."

No need. The people claiming that autism is mecury poisoning have failed to prove it. Accept that, John, and your life might actually get easier... this is what holds you back, John!!!!

What amazes me is John's adherence to mercury poisoning. Forgive me if I am wrong, but he never had his son tested for levels of mercury. He just began applying some sort of chelation therapy to his son and now he is saying his son is better because of the chelation therapy.

In a court of law he will go for the emotional appeal with a jury. There will be one of two strategies:

Always dancing around the fact that he has no proof relating to his son. Always dancing around the fact that this cause and cure has been determined to be uninformed oppinion and quack science.

I had been worried that Best actually had an authoritative position in NH. I still am. Does he have any authority or decision making power over the people he is presumably working to help? If he has a law case pending against the drug companies then he certainly has a bias and a conflict of interests. He certainly is in no position to be open minded enough to make any sort of decisions.

Thanks for the references David. What's got me frustrated is that the definitions seem to be all over the map, not just as to the criteria for autism, but also what the researchers consider to be functional speech.

The question I'm trying to answer is this: Let's suppose a toddler who is not yet talking is evaluated by a psychologist and identified as being somewhere on the autism spectrum. What is the probability that the child will, at some point, become able to communicate either through speech or through some other effective method such as typing?

I'm thinking that the probability is quite high (it must be well over 90 percent, if the research study I mentioned in this post is accurate) and therefore, many parents' fears about having a child who will forever be mute and non-commmunicative are way out of proportion to the actual likelihood of that happening. As a result, many parents have a very inaccurate perception of the cost-benefit ratio with regard to autism "cures" and therapies.

There weren't any flaws in my reasoning, John. I was insulting you because you seem to be full of insults when you speak to others, especially autistic people, whom you feel to fee superior to, just like a bully tries to feel superior to people of percieved difference. The only flaw in YOUR reasoning is these people who you find yourself arguing with here claim to be autistic, and you haven't been superior to anyone, as far as I have seen.

If you ever realize you are consistantly out argued by autistic people I wonder how you might feel about yourself.

Best, you do serve a very important social function, and that is as serving as a bad example. "Class this is John Best. A grade A bully and blockhead."

Another great one. Thank you! And, I must add, the number one argument from other parents against me is always their sob story--how obviously my child is not as 'bad off' as theirs is. Naturally, they go off on this before knowing a single thing about my child. That's pretty much how they do everything, I suppose! Opening their mouths & subjecting their kids to God knows what without knowing all the facts.

Links to this post:

About

This blog began its journey in May 2005, countering misinformation and stereotypes about autism. The title was chosen to make clear that autistic people are not changelings or aliens, but are human beings who have just as much right to inhabit Planet Earth as anyone else.
Now, as it reaches the end of its five-year mission, I would like to thank my readers and everyone who is working toward understanding and acceptance. May you find blessings wherever you go.
— abfh, May 31, 2010